Friday, July 25, 2014

Sounding the Real Alarm: Battling Autism Hate Speech


For this post, I am going to be talking about Autism Speaks’ new documentary Sounding the Alarm: Battling the Autism Epidemic, shown at Massachusetts General Hospital’s Lurie Center for Autism, but before I do, I want to explain something in response to a question some of you may very well ask.  Before you ask me, “have I seen Sounding the Alarm?  If you haven’t, how can you say it’s bad?” why don’t I ask you, “Have you ever read Adolph Hitler’s Mein Kampf?”  “Have you ever watched Keeping Up with the Kardashians?”  “Have you ever eaten a fried Snickers?”  If you can ask me how I can hate Sounding the Alarm if I’ve never seen it, is it not fair for me to ask how you can know that Mein Kampf is hateful, that Keeping Up with the Kardashians is idiotic, or that fried Snicker’s bars are disgusting?  Now, assuming you reading this are following along with me, I would like to tell why I am against Sounding the Alarm and to mention that I have heard respectable reviews about this movie from sources I trust very much the way you may have developed distaste for Keeping Up with the Kardashians.  Just like the average citizen makes their decision about new movies in theaters by reviews from critics, I make my decision about Sounding the Alarm by people I trust and who have seen the movie, though you’re free to watch it if you doubt me.  These sources include well-known writer and mother of a severely autistic child, Susan Senator and people from Charity Navigator’s most highly rated autism charities such as the Autism Women’s Network and the Autistic Self-Advocacy Network.  Now, if you can forgive me for the fact that I may be unfairly insinuating that you are in-line with the makers of this movie, you will see what I have wrong with it, and perhaps why I may have come off so harshly at you at the same time.

-In the beginning, there is a black screen showing statistics on the “rising rates of autism” accompanied to threatening music.
                -At no point in the film is there mention that the rising numbers of children being diagnosed are due to the increasing number of professionals able to diagnose autism.

-Throughout the film there is talk of the costs of autism.  One example includes Autism Speaks co-founder Bob Wright lamenting the fact that children (or rather) people don’t die of autism, despite the fact that his grandson is autistic.  There are also interviews with doctors talking about the millions of dollars autism costs and parents complaining about having to pay for “autism therapies” out of their pockets.
                -Nowhere in the film did they mention this: that many autistic people find ABA, the autism treatment most discussed in the film, to be degrading and dehumanizing.  It takes eight hours a day of ABA for it to show any effect, hindering children’s right to be a child, not an experiment.

-In part of the film, a young man with autism and Down syndrome was shown with his parents and care-givers explaining how he was unable to communicate.
                -He was communicating right in front of them and they weren’t listening.  Even though he wasn’t communicating with verbal speech, he was trying to communicate to them, and like many autistic people, he tries to learn to communicate with people around him failing to listen.

-At one point in the film, a man named Dan Spitz of Anthrax came on, calling parenting a child with autism “a living hell.”  He later complains about having to work to provide autism services for his child, and hugs his wife goodbye before he goes on tour.
                -The fact is, most parents have to work to provide for their families.  According to Autism Women’s Network contributor Lei Wiley-Mydske, “I know plenty of military families who have Autistic children who are separated for long periods of time that don’t blame it on Autism.  Once, my husband went to the Canary Islands to work for eight weeks because he has to work so that our family has money, but he didn’t blame the fact that our child was Autistic for our separation.  Maybe it was my Autism that caused it?  In any case, most people have jobs and have to work to make money and that is not the fault of Autism.”

-There is a scene at an autism walk where they address, a legitimate concern, that people in marginalized communities do not have access to resources. 
                -Autism Speaks fails to mention how only 4% of their money went into autism services in 2012, and 3% in 2013, on what happen to be their own tax return forms, which all charities are required by law to publish, yet Autism Speaks continued to bemoan the lack of services for autistic people.  Autism Speaks spends immeasurably more money on research and administrative costs, rather than on the people who need it the most.

-At one point in the film, a mother says she cannot trust her son to strangers because, “Most days I want to kill him.  And I love him.  How am I supposed to expect strangers to have the patience with him?”  This strikes a chord with Autism Speaks former video on autism where then-Autism Speaks executive Alison Tepper Singer claimed when she found out her daughter was autistic, she wanted to drive the car with her daughter in it off a bridge, and the only reason she didn’t was because her non-autistic daughter was waiting at home.

-There is much talk about research into the causes and cures for autism throughout the film.  The fact is I don’t need to be cured.  I am not a burden. I am not a living hell.  I am not a science experiment or someone who cannot communicate.  I am a college student, a writer, an artist, a friend-to autistics, neurotypicals, Downs people, dyslexics.  I am a flautist.  I am an employee, and I am several things that Sounding the Alarm doesn’t mention. This is not raising awareness.  It is scapegoating, fear-mongering, and comes from people who do, at best, the bare minimum of what’s expected of them.  If their rhetoric of autism being the equivalent of a tsumani or a burden is changing the lack of autism services, why are they still complaining about it?  Autism Speaks has lost key members now such as John Elder Robison, author of Don’t Look Me in the Eye, and noted blogger of A Diary of a Mom, who spent years trying to reform Autism Speaks, after Autism Speaks co-founder Suzanne Wright made a speech to George Washington University claiming, “If three million children in America one day went missing – what would we as a country do?  If three million children in America one morning fell gravely ill – what would we as a country do?  We would call out the Army, Navy, Air Force and Marines. We’d call up every member of the National Guard. We’d use every piece of equipment ever made.  We’d leave no stone unturned.  Yet we’ve for the most part lost touch with three million American children, and as a nation we’ve done nothing.”  Followed by saying, “Maybe their child has been trying to bite them or themselves.  Maybe they can’t afford the trip to a doctor specializing in autism.  Maybe there is a waiting-list for ABA, speech and OT.  Maybe their insurance won’t pay.  Maybe they don’t have the money to pay a special lawyer to fight for school services.”  This speech sounds very Hitlerish to me.  If you were to hear Iranian leader’s “Death to America” speeches hosted by Duke University’s political science program, then you’d see how I feel about this movie.

Saturday, July 12, 2014

The Myth of the Spectrum: Diversity of Autism is Not Diversity of Weakness


Every living thing is a genius; however, if a fish was judged by its ability to climb a tree, it would spend its entire life believing it is stupid.
                                                                                                                                                -Albert Einstein

                A little over a year ago, when I was looking on a page from the Autism Support Network called Top 10 Terrific Traits About Autistic People, I came across a comment by a mother asking if they could say any good things about level five autism (which her son had), which requires twenty-four hour supervision.  At the time I thought, he already cannot live on his own; what’s the point?  Today I realized that was wrong and was very cynical and fatalist. 
                Over the years, I’ve gotten to know people with very diverse abilities with incredible personalities, talents, and who have shaped the way I see the world.  I happened to know of a non-verbal girl with autism who could not speak, but who also sang beautifully and made beautiful pottery.  I know a man with Down syndrome won second place in a pottery contest in high school.  I can barely get my hands the right way on the wheel. 
                What I was fortunate to learn in my first year of university life was that there are many different types of intelligence, besides the predominant one of logical/mathematical intelligence, by which our society judges intelligence.  The other types of intelligence include natural, musical, existential, interpersonal, bodily-kinesthetic, linguistic, intrapersonal, and spatial intelligence.  But in our culture it seems that a person’s level of logical/mathematical intelligence is used to judge the person’s intelligence in every other area.  Unfortunately, the prevailing medical model of autism goes by the traditional model of judging intelligence.  Autistics and other disabled people who cannot live on their own are simply deadweight, burdens on the rest of society.  Of this idea, non-verbal and lower-functioning people with autism are the biggest victims.  However I happened to have met many non-verbal autistics and learned they can communicate and often times live independent or semi-independent lives.  Among the non-verbal community is autistic activist, blogger, writer, and poet Amy Sequinza.  I’ve been in touch with Sequinza through Facebook and happen to know she is a better wordsmith than many verbal neurotypical people I know.  Yet for many parents of non-verbal children with autism, they are feeling, “I wish my son/daughter would say ‘I love you’ or ‘thank you’ for all the work I do for them,” when in fact they are, through the stimming (flapping arms, rocking) that parents like them raise millions of dollars to cure.  The definition of stereotyping or caricaturing is to define a group of people by a single or limited number of traits while ignoring individual differences among them.  When Suzanne Wright, cofounder of the largest medical model think tank on autism, Autism Speaks, spoke at George Washington University, she said that autistic people are people who cannot dress themselves, brush their teeth, or take a shower.  That is what I believe Mrs. Wright was doing, describing certain people with autism yet ignoring differences in their personalities, temperaments, and opinions.  For people with that mindset they are assuming that they could never connect to an autistic of this type, but they do not know because they’ve never communicated with them in a way they can both understand.  They judge them by how their abilities are in one area (independence), and mistakenly believe that it is an indicator of their abilities and potential in every other possible endeavor.  The reality of the idea of autism as a spectrum of abilities is that it is a spectrum of the ability to live independently, not the ability to thrive in any pursuit.  The terms “high-functioning” and “low-functioning” deal mostly with an autistic person’s ability to live independently, not the ability to live fully and dignified.  Autism is different for everyone, but the desire and right for and to respect and access to reach one’s full potential is not.  While independence and self-reliance are gifts that ought to be treasured, we also should value every autistic for what it is they can contribute and realize they have their own gifts to share with the world. 

Friday, July 4, 2014

Lending My Buddhist Knowledge and Experiences to the Health Care Profession


I realize that I've been Buddhist for several years now.  I’ve done much with my Buddhism (meditating every day, starting my blog, incorporating it into my work as a writer and an artist, and so forth).  And this all reached a high point when I got in touch with a counseling intern at my old high school who is in a master’s program for Social Work.  She Facebooked me saying she wanted to do a project on Buddhism for her class in cultural diversity, and thought I would be the perfect person to consult on that, asking me if that was alright with me, and of course I said yes.  Afterwards she messaged me to thank me for my comments and said her classmates really enjoyed them.  Below I have transcribed the questions she asked (copied and pasted) and provided my answers to their respective questions.  For many of my Autist Dharma fans this information will probably be review, as it will for fans of my other blog, but there’s plenty new information, so keep your minds open because it’s all here at autistdharma.blogspot.com.  Enjoy!

1) How long have you been practicing Buddhism?
I have been practicing Buddhism for nearly nine years, since I was sixteen. 
2) What originally drew you to Buddhism?
I loved Buddhism’s peaceful and practical philosophy.  I liked the artistic and cultural prowess of the Buddhist culture, which I was introduced to from books and the Buddha statues that I would see at grocery stores, and something about that let me think there was something about Buddhism that would be good for me.
3) How has this made a difference in any or all aspects of your life?
I have been meditating regularly for a little over two years and because of that, I notice I am much more relaxed, creative, and feel much closer to the people I care about, whether about work, school, or relationships. 
4) Do you attend services, or practice individually, or both?
Since I live in a small town without a Buddhist temple for most of the year (my college town of Warrensburg, Missouri) there aren’t a lot of chances to attend Buddhist services, so much of my practice consists of my morning meditation alone in my dorm.  However, when I’m not at school, I normally go to a place called the Pathless Land Center for Mindfulness, Meditation, and Magic (I know that’s a mouthful).  It isn’t strictly Buddhist and it draws ideas from other philosophies, but is generally compatible with Buddhism and uses Buddhist meditation and other practices that are similar to Buddhism in its practice, and is open to people of all belief systems.  It used to be called the American Buddhist Center (ABC), but it changed its name to attract people of other belief systems.  I have been going there regularly for five years. 
5) What is important for people not familiar with Buddhism to know? 
What I would think is important is that Buddhism is a belief system that has had a profound influence on the diverse cultures of the Asian continent and in the West as well.  Many if its tenet are compatible with other faiths, and it really isn’t about what you believe, but how you live your life.  It is in fact very alive in the West, though I tend to think it hasn’t had as much of an audience among the younger generation of Westerners, but truly it is compatible with people of all different cultures.  Many of its practices, such as meditation are much easier to learn than some people may think.
6) How can social workers be more sensitive in working with Buddhist clients?
One thing that is probably a great thing to know is the psychological and spiritual impact that Buddhism can have on a person’s life.  It is also important to know that even with that, good Buddhists can still feel anxiety, frustration, grief, and other unpleasant things.  Buddhism is something that really takes a lot of time to truly get the hang of and even I still struggle with it sometimes.
7)  Tell us more about your blog and how Buddhism and being an advocate for people on the spectrum intersect.
My blog The Autist Dharma is a blog I started after my first blog Ben’s Blog.  Ben’s Blog deals with my experiences at college life and from it evolved The Autist Dharma (Dharma is a word for Buddhist practice).  The Autist Dharma deals with my work for people with autism and my own experience as a person with autism, and also talks about how Buddhism has had an effect on that.  There is a long-time Buddhist trend called Socially Engaged Buddhism, which applies Buddhism to social activism.  An example would be how Buddhism can help lessen greed in people’s mind and therefore mitigate the exploitation of people throughout the world for profit.  I also believe meditation can help us be more aware of what is going on in the world, such as how people with autism may be treated by others due to their disability.  The Autist Dharma deals a lot with socially engaged Buddhism and how it relates to ways of thinking that can be detrimental to the welfare of others and may also show up in the world of autism.  Buddhism also helps me to love myself for who I am as well as others, and to be patient with other people, which in turn is positive towards my ability to reach them and work with them, and to accept people of diverse abilities, which in turn has given momentum to helping to create a more welcoming world for people with autism.  Buddhism is also beneficial to my writings and other creative works that I do to help change the public’s view of people on the spectrum.  Ben’s Blog is idea I had to help show the world what people with autism can do with the right schooling and supports, and it also talks about Buddhism in both the ups and the downs of my daily life.  These blogs can be found at benledwardsblog.blogspot.com, and autistdharma.blogspot.com.